When Your Loved One Is Affected By Dystonia. Guidance For Family Members

Joaquin Farias PHD, MA, MS

Life can be very confusing and stressful for a person diagnosed with dystonia, but what many don’t realize is it is also very unsettling and baffling for family members, partially because they do not understand all of the symptoms that can be intertwined with the condition, but also because their lives can be greatly impacted too.


For Loved Ones of those with Dystonia

It is typical for family members to wonder, “Why is my wife so anxious/depressed?”, “Why is my husband acting like a hypochondriac, seeming to have so many new health issues?, “Why is my brother suddenly bothered by loud sounds or different smells?”, “I understand that having movement irregularities must be frustrating, perhaps painful and may sometimes affect career choices or abilities to help around the house, but why is he/she suddenly so consumed with it to a degree that seems out of proportion?” These are common questions many loved ones have.

What you need to know to help your loved one affected by dystonia

Knowledge will be key for the loved ones of a patient.  Learning the wide variety of symptoms a patient can endure, but also knowing there is a roadmap to recover lost movement control, cognitive and emotional function will take the enormous burden of uncertainty and misunderstandings off the table.

Educate yourself about the condition

Dystonia is more than spasms and tremors. Dystonia has significant non-motor symptoms too, such as fatigue, dizziness, nausea, vertigo or pain. Struggling with dystonia related anxiety or depression is also common among Dystonia patients. This is due to multiple systems in our body being unbalanced and the interconnectedness of many brain neural circuits. Understanding this and knowing many of these symptoms can be helped or remedied with natural, science based methods is a clarifying relief for loved ones.

Understand your loved one’s emotions as part of the process

Feeling misunderstood and fearful are just two of the emotions bombarding almost every dystonia patient. Learning why it is happening (in an attached post) and knowing holistic tools are available to help diminish these emotions will be another clarifying relief for loved ones.

Be patient

The best help you can provide to your loved one affected by dystonia is compassionate care and patience.Dystonia is a chronic condition, following the right rehabilitation it will take months to reduce symptoms, patience is needed and emotional resilience will be required. Nothing will help a patient going through the recovery journey more than a loved one on their side who understands the process and allows the person time to take care of himself or herself.Give your loved one space to feel all the conflicting emotions he or she will feel during recovery, from hope to fear, from hopelessness to recovery motivation. Those are their feelings not yours, and this emotional roller coaster is necessary to achieve the final end goal. Dismissing the affected person’s right to feel some negative emotions will interrupt the integration process which is necessary for healing.

Take care of yourself too

Caring about and trying to help someone with a medical condition can be draining, plus rehabilitation efforts can require time by the patient which may shift some responsibilities to family members. Carve out some alone time, just for you. Get together with friends or family, take a morning run or enjoy a weekly hobby.  Doing so will help you avoid the pitfalls some can fall into of exhaustion, frustration or sadness.  By creating some ‘you time’, you can regularly reboot, both mentally and physically.

Accept that recovery will take time

This acceptance applies to both patients and loved ones. Since recovery can take time, it is important to avoid constantly talking about the symptoms, or living your life together around the symptoms lest your lives become only about dystonia. Asking a person how they feel once in a while is caring, asking constantly can make the person affected responsible for your emotions. As a patient, you may find friends and family have limits in wanting to hear about your symptoms, try to respect that. Education will go a long way to the patient knowing their loved ones truly understand (and don’t have to be convinced) they are in fact going through both a complex physical and emotional trauma that needs some time to heal, and a chronic condition they can learn to manage. 

 It is also important to note, the more a patient focuses on the symptoms, the more challenging it is to cope with the condition as obsessing feeds stress which typically worsens symptoms. It will be a delicate balance of acknowledging the condition, but also having the ability to put thoughts of it aside so we can mentally engage with other areas of our lives.

Start your Recovery Journey Today

Join the complete online recovery program for dystonia patients.

“Life is what happens while you are busy making other plans”

 John Lennon’s words have special meaning in this context. Do not stop your life together until your loved one is recovered. Have the life you want now, recovery will happen in the meantime.
Going out together, watching a movie, going for a hike, not mentioning the symptoms for some days can be very helpful for all concerned. Yes the symptoms may still be visually apparent, but accepting that and ‘living anyway’ will open up space to welcome in new experiences.  Enjoying activities, that are apart from dystonia, will keep your lives rich and connected.

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